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The literature on inclusive research has established its relationship with self-advocacy for people with intellectual disabilities. Self-advocacy has been described as both a requirement and a result of inclusive research. Additionally, the process of becoming an inclusive researcher can be seen as self-advocacy for people with intellectual disabilities. As inclusive research continues to become more prominent, and more people with intellectual disabilities become inclusive researchers, we need to continue to consider this fundamental relationship and how self-advocacy and inclusive research can inform and support each other. In this paper, we first discuss the history of self-advocacy and inclusive research and what inclusive researchers have shared about the relationship between self-advocacy and inclusive research. We then present the experiences of an inclusive researcher with intellectual disability with self-advocacy and how the process of becoming an inclusive researcher impacted those experiences. We conclude the paper with reflections on how future inclusive research should consider the role of self-advocacy. [ABSTRACT FROM AUTHOR]

The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with intellectual disabilities as unable to self-advocate or as lacking agency and self-determination; second, due to a lack of trained researchers and ethics committees on inclusive research practices. This paper critically reflects on and discusses the strategies and methods used to conduct an inclusive research study in Kenya. The focus was on the methodological approach of including people with intellectual disabilities as researchers in Kenya. Two people with intellectual disabilities were trained as research assistants. This paper describes the experiences with Institutional Review Boards, the processes and experiences while training this research assistants using a UK-developed curriculum, and fieldwork experiences while piloting interview guides, conducting interviews, and conducting focus groups with this research assistants. This study findings indicate the need to culturally adapt co-researcher training, the importance of working with support personnel who empower researchers with intellectual disabilities, and the need for greater advocacy to change negative attitudes towards people with intellectual disabilities that hinder their participation in research. [ABSTRACT FROM AUTHOR]

This paper pursues the argument that finding a way for people with profound intellectual and multiple disabilities to belong in inclusive research requires starting from a deep knowledge of the people in question. This paper illustrates this idea in action showing what can be possible from building research around 'being with' people with profound intellectual disabilities, creating intersubjective knowledge together. It follows the journey of fostering a relational research space that a young person with profound intellectual and multiple disabilities can occupy, their assenting to share the space and ensuing exploring together in embodied ways. Small stories show where this particular open road of inclusive research can lead. The analysis interacts with provocations from decolonising research that demand respect for wider ways of knowing, doing research and being human. The paper invites reflection on the ways in which research needs to be deconstructed to be inclusive for all. [ABSTRACT FROM AUTHOR]

A key feature of inclusive research is the accessibility of research procedures to meaningfully engage people with intellectual disabilities in research processes. Creating accessible research procedures requires innovations in methods traditionally used in research. This paper describes how the Lifeline Interview Method by Assink and Schroots was adapted and implemented in a study using life story research to better understand the experiences of older adults with intellectual disabilities. Twelve adults with intellectual disabilities over the age of 50 participated between two and seven times in interviews about their life histories. The interviewer assisted in the construction of timelines of key events in the participants' individual life stories, and the participants decorated their lifelines throughout the course of the interviews. The lifeline process was an effective tool to engage the participants in the research process, support participation, and provide access for people with intellectual disabilities to retrieve their life experiences. Challenges in the lifeline process included barriers to gathering sufficient information to construct timelines and gatekeepers withholding access to information. [ABSTRACT FROM AUTHOR]

Inclusive research has been an important way of increasing the understanding of the lives and issues of people with intellectual (learning) disabilities for 30 years. Three authors of this paper, Amanda, J and Kelley, are Australian and have been conducting inclusive research for much of this time. The other three, Danielle, Shaun and Jan, are English. Jan has been doing it for a long time, while the others are relatively new to it. In this paper, we explore together what inclusive research has achieved in its original aims of supporting people with intellectual (learning) disabilities to have a heard voice and in working towards changing attitudes, policies and practices in relation to supporting them to lead good lives. Fundamental to achieving these aims was the need for active participation by people with intellectual (learning) disabilities in conducting research relevant to them. We record what we have done, how we did it and why it was important to do this work together. We focus on what inclusive research has meant to us and how it has been used to get positive change for people with intellectual disabilities. We end with a summary of what we think inclusive research can achieve and where we think it needs to go next. [ABSTRACT FROM AUTHOR]

Positive developments in inclusion in line with 'Nothing about us without us' have rarely extended to people with profound intellectual disabilities. Advances in inclusive research are in danger of leaving this group (and their families and allies) on the outside, with researchers relying on proxies at best, or more often omitting this group as 'too difficult' to include in the research process at all. This paper argues that finding a way for people with profound intellectual disabilities to belong in inclusive research is important. Using examples, small stories and photographs, it explores and illustrates potential ways to research with and alongside those with profound intellectual disabilities that celebrate different kinds of agency and personhood and that support relational autonomy. The paper concludes that rather than starting from how inclusive research is currently conceived, the starting point should be a deep knowledge of people with profound intellectual and multiple disabilities. The way forward is likely to be an inclusive research culture that can accommodate 'being with' as core to its research approach. This will enable the voices of people with profound intellectual disabilities to inform the research in creating intersubjective knowledge together. [ABSTRACT FROM AUTHOR]

In reflecting on the title of the special issue: Inclusive Research: A road less or more well-travelled, this paper reviews the strengths of inclusive research that have augmented the global knowledge about the lives of people with intellectual disabilities across the lifespan. The successes of inclusive research are outlined with the respective ongoing individual challenges discussed. Authors will draw upon their own experiences of inclusive research, together with the seminal and current literature, as well as the dialogue between them. The conclusions of the article are in the form of recommendations aimed at increasing the traffic on the road of inclusive research through: 1. expanding its purpose and parameters across all forms of disability research; 2. developing systems for sustaining inclusive research as a funded model; 3. creating capacity to enable people with intellectual disabilities to be employed as researchers directing research projects; and 4. establishing bridges and crossroads with policy and practice through its findings. [ABSTRACT FROM AUTHOR]

The funding of a research project working with local governments and people with intellectual disabilities led to the establishment of an inclusive research team within a university faculty. The core team consisted of four people, including a design researcher, an architect, a disability advocate and a community researcher/self-advocate. Though there are ample attention and resources devoted to the front-facing parts of a university being visibly inclusive—mostly from a physical access perspective or focussed on the student experience—less attention has been directed to what it means to develop and support inclusive research and aligned work opportunities for people with intellectual disabilities within a university campus. For this reason, the paper explores what it was like for our team that included non-traditional academics and people with intellectual disabilities to work at a university in a design school (not a disability-related research centre). We employ a process of collaborative autoethnography to reflect on how different team members took the lead across different parts of the study. We conclude with a set of tips for the development of more inclusive research teams within university settings. [ABSTRACT FROM AUTHOR]